Building my life after the devastating effects of Necrotizing Fasciitis
(The Flesh Eating Bacteria)

Monday, June 20, 2016

Progress and setbacks

Headaches are back. Not (yet?) as intense as they were before the "break" (with the steroid treatment and afterward), but they are back.
(good news is that the flu only lasted two days....)

My neurologist had directed me to raise the dosage of my nerve pain medicine, and that would be the prophylactic measure against the migraines. He said to raise it quite high. I had started doing that, incrementally, and when I got to 75mg (aiming for 100mg), a tremor started to appear, I could not keep my hands steady. This has happened to me before when I was on a different nerve pain medicine called Gabapentin, and I had to go off of it. There are many other side effects I am also experiencing with this high dose, as well, like shortness of breath (it makes me feel faint), pins and needles in my legs and feet, weight gain, and others.

So, I reduced the dosage again. Tremor is almost gone, breathing freer, thank Gd.
It's all just one big yo-yo.

Here we are again with no protection when I feel a migraine coming on.

We are headed to New York in a few weeks... I can't say I'm not a little worried about the what if's about being away. But it's out of my hands.

Good things are happening, too.... on the "good" days for me, when I have no pain or headache, I am on top of the world. It is a really new experience for me to have days- quite a few in a row- that I honestly have no pain. At all. I had forgotten what that felt like, to have no pain at all. Those days are miracle days for me. I milk them for all they are worth, and get into bed at night satisfied and optimistic.

Last night we went to a wedding, and Robert and I went together. I know that sounds to you like a given, but it occurred to me that I haven't been to a wedding in a loooong time. Usually I have to
bag out because I am some sort of sick. I have missed a lot of celebratory events and special occasions because of being chronically not well. It comes with the territory.

The wedding was fun, I danced a lot. Nothing hurt.
Today, however, I am paying for it I guess, with a headache. I realized in the car home last night (an hour and a half drive from the wedding) that hearing people talk in the car was just too much stimulation for me. It was actually challenging to be in the car with conversation happening, after just having been at a lovely, but loud and busy wedding. I have a deep need for quiet. It wasn't always that way,

OK, I have to go to sleep now. Unhappy headache hanging around.
Tomorrow I am driving into Tel Aviv to accompany my friend to her oncologist appointment. It's gonna be a long day.

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About me and the blog

This blog is about the hard stuff that has happened to me since I got sick... very sick, in 2007. When you read it, please know also that there is lots and lots of GOOD, amazing, miraculous things in my life. I need this blog, however, to get out the hard stuff.
That hard stuff started out with a simple run-of-the-mill surgical procedure to fix a small hernia I had. I was completely healthy before that. Four days after the operation, I was readmitted to the hospital in tremendous pain. Nobody knew what was wrong, some nurses didn't even believe my pain was that bad. Tests were done, nothing was noticed. A few days later I was taken in for an exploratory surgery to see if the source of the problem could be identified.
The next thing I knew after going under for the exploratory surgery was that I woke up many days later, from a coma, completely unable to move my body or communicate.
I slowly learned that I almost died from the “flesh eating bacteria”, Necrotizing Fasciitis. I had suffered tremendous bodily damage, but survived.
From that point on, my life has been taken over by medical problems, more diseases, many more surgeries and so much pain.
When asked what I do, I say I am no longer able to work, but I am an orchestra musician, I play french horn, and I am a birth doula. Since 2008, however, I have not been able to work.
I am blessed to be able to raise my four beautiful children and continue life with my loving husband, Robert. That is indeed my life's work. When I got sick, I was 39, and my kids ranged in age from 1 + ½ to 7. It has been an amazing, tremendously difficult journey we have all been on. I invite you to randomly read blog entries from this blog, as well as the CaringBridge blog, which can be found on a button under this write-up.
I appreciate all your letters and feedback either personally or on my blog. The support and encouragement I feel from my readers is the fuel for my writing. I thank you for joining my journey!

Contact me directly

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my blog is also here

"footbridge", by Ruth Gresser

Getting from one side to the other is where we find the colorful part of living...

People, Places & Things

Robert= husband, friend, anchor, ezer k'negdo.

Dov= oldest child, boy variety

Ya'akov= 2nd child, also boy variety

Shifra= 3rd child, girl variety

Azriel (Wazi)= 4th child, again, boy variety

Emma= my dog. We adopted her while she was pregnant (how else does a dog get to Sarah?), she had her 7 puppies here in our garden, we raised them for 3 months, and then one-by-one gave them away to new homes. We have Emma with us now, a dearly beloved part of our family.

Gapey= the large (26cm x 13cm, or 11in. x 6in.) wound on my left upper thigh/lower belly/groin after the debridement surgery took out all skin layers, parts of muscle & ligament

Scrapey= the other wound; the area all around my right thigh where the skin was taken in rectangular patches for the graft which was used to close gapey.

Shapey= the odd shape on my left outer thigh which was caused by the cellulitis infection (March 2008). It is still damaged looking, and remains sore to the touch